The NHS Care.data program has been cancelled due to a review – there were major privacy concerns, and lack of transparency.
Plans for patient’s records which were to be trawled have been put on hold following concerns by the public about how their private data would be used. Although NHS care data scheme was intended to help in the provision of quality services, the fear of how the data could be used has been a major cause of concern. The Doctors and the ministers have also raised concern that the public has not been properly informed on how such data would be used.
The project intends to collect confidential information so that the information could be used to ensure provision of quality and safe services. The information collected could be used to highlight on diseases and conditions that may require more NHS investment. This and many other reasons make the scheme ideal. However, it has been noted that the patient’s information could be available for sharing despite the fact that such information is private. When such confidential information is available for sharing, people will lose trust. The fact that the patients whose data has been collected can also be hacked may further degrade the patient.
Although the risks of having such information hacked into or accessed by unauthorized persons has been mitigated by having the information de-identified before it is released, there is still fear that crooks will use technology to link the information to the patient.
The benefit of the scheme which includes efficiency, better patient care, and economic growth are too great and overweighs the patient’s privacy risks. Yet the extraction of the data if done without the consent of the patient may make the patient lose trust in the health care services and many of them may opt to keep off to avoid the risks.
It is also argued that if implemented without the risks being mitigated, the patients may opt to withhold information from the doctors treating them because of fear. This will compromise the quality offered and the quality of data care obtained from such patient may be of no use. To mitigate this, the NHS constitution gives the patients a chance to object their personal data from leaving their GP.
The scheme has guaranteed that the information containing the patients’ records will be treated as confidential and that NHS staff will be trained on how to handle such information. According to the government, measures have been put in place to ensure that the consent of the patient is always sought each time data is to be shared. The data protection act criminalizes the sharing of the data without seeking consent.
Already there are leaflets circulating asking patients to opt out of GPs because of the fear of confidentiality. This installs fear in the patients who may opt not to talk to the doctors. This will risk their lives because the doctors require such information to make decision on the type treatment to give to the patient.
The fear that after the patient consents to have his information shared may make it difficult for him to opt out at a later date since the information will already be in the hands of other people.